The unique experiences of raising a brain-injured child and her two brothers.

Wednesday, January 21, 2015

Trading Tolerance For Hope

January 1, 2015. On the first day of this brand new year, I called 911. Chris handed me the phone after several minutes of our usual debating on whether or not to make the call.

He had walked into her room 10 minutes before and was greeted by her convulsing body and lungs gasping for air while she lay in bed. In the kitchen, I heard his voice carry throughout the house, “Where’s the medicine?!” I instantly knew what was happening, merely by the alarm in his usually low-key voice. When it comes to breaking up a perfectly peaceful day in the Haden household, grand-mal seizures never disappoint.

Without fail, they rise up in me the feelings of a calm sort of terror and finality. This is it. She’s going. No matter how many times we witness one, no matter how many times Chris hands me the phone, no matter how many times I go over her medical history with the EMTs, I am innately aware that it could be the last time.

This one was different than others. We have pretty much had this grand-mal seizure deal figured out. Sometimes she breathes through them, sometimes her lips turn blue as her lungs refuse to fill with oxygen. For some reason, this time proved tricky as her seizing body laughed in the face of our magic medicine, forcing us to call for backup (aka: 911).

Holding Elise in my arms, I watched as 6 EMTs flooded into her pink and green bedroom, equipment in hand. After assessing the situation, they further medicated her with a shot in the thigh, monitored her vitals, and left us to return to life as usual 40 or so minutes later. (I sign off on them not transporting her to a hospital once she returns to her baseline in these situations. I’m sure other parents of kiddos with severe epilepsy can understand why I do this...)

The very next day would find Elise and me in the Emergency Room seeking help for a bladder that has started a cruel game of “I don’t know what I’m supposed to do anymore”. Not a fun game, by the way.

While examining her, one of her doctors and I began talking about how pretty much everything in these kids’ lives gets worse with each passing year. This doctor, who knows Elise very well, looked at me and said something that has found a permanent home in the part of my brain reserved for “things that make me go hmmmm”. (fellow 90’s teens: try getting that tune out of your head!)

He looked me in the eye and said, “You do well with what most wouldn’t tolerate.”

Hmmmmm….

Knowing this doctor’s vast experience for the past 50 years with kids like Elise, kids better than her, and kids worse than her, I am aware that he has the authority and understanding to find great truth in this statement. Although I can name numerous moms, dads, grandparents, and other family members who care for their brain injured children with love and devotion, I totally understand where he was coming from. It was a compliment. Unfortunately, it is a true statement that scores of parents and caregivers of kids like Elise drop the ball, check out, or just plain give up on life and their child. It’s the human condition. Tragic and demanding circumstances such as these can drive parents to divorce, cause loneliness, depression, and a lingering feeling of discontent in those affected. People are overwhelmed, angry, depressed, despondent, stressed out, deeply disappointed, and, well… human.

When I replay his choice of words in my head, it kind of makes me sad for Elise. To others, her life probably does look like something to be tolerated. Especially to a physician, who sees the absolute worst sides of the life of a brain-injured child, neatly glossed over and hidden from the general public.

Why did I feel uncomfortable with his compliment? It wasn’t just the thought of my daughter being something to be tolerated, but it went deeper than that. The doctor was praising me for something that I owe completely to someone else.

So much of life is ugly. What I have discovered in this most trying season of my life is that what at first looks ugly, heartbreaking, and terribly unfair, can actually hold great beauty from other viewpoints.

My favorite point of view is from high on top of a mountain called HOPE. I don’t have to climb this mountain weighed down by expensive gear. I don’t have to buy a ticket to ride up on a gondola. I don’t have to hire a professional to guide me to the top. I simply have to decide to be there and there I stand. From this mountain looking down, I can see it all. The ugliness, the fear, the disappointment and anger. I stand high above it all, knowing I am safe from their effects. Christ has provided me this mountain named HOPE as a safe haven, something to trust in and hold on to as a promise of what’s ultimately to come.

Just using the word “hope” can sometimes be hard for me because I believe it to be greatly overused. It’s one of those words that is easy to say while you are happy and thriving in life. When things get dicey, the mere utterance of this word can elicit an apathetic eye roll.

The Bible says in Romans 8:24-25:

For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.

Bible.org states, “… hope is the confident expectation, the sure certainty that what God has promised in the Word is true, has occurred, and or will in accordance with God’s sure Word.”

When you get down to the actual Biblical definition of hope, you can realize just how powerful it is, and how desperately we all need it. Should we reserve our talk of God’s beauty, His hope, and gift of grace for only when our feelings reflect them? Or, should we pull from these truths with even more vigor when what we are going through is the antithesis of earthly beauty, hope, and grace?

It is so extremely important to hold onto God’s promises ALL of the time… during the Good, the Bad, and the Ugly. For Elise’s life, and mine as her mother, these following short clips represent what I’m talking about… Be sure to maximize the view...

(Since I never like to end anything on a negative note, I have changed the order around in this video. I start with the BAD, move on to the UGLY, and end with the GOOD!)

Warning: Within this video, there is a short clip of Elise having a seizure. It's not her biggest/worst, but not her smallest/easiest, either.

From where I'm standing on the top of this mountain of hope, the bad and the ugly will always be there lurking in the valleys. Like beasts they are clawing at the hillside, growling and snarling in hunger. My eyes, instead, are drawn to the beauty of the land around them and the safe ground on which my feet stand.

Where does my smile come from? Hope in Jesus!

How do I “do well” with what others may not tolerate? Hope in His promises!

How can I say with all confidence that I find purejoy in Elise as she is? Hope in the Grace of Christ!

I love this verse...

Psalm 34:17 - "When the righteous cry for help, the LORD hears and delivers them out of all their troubles."

I don’t love it because it promises an ending to what we are going through with Elise. I love it because I have trusted what it says and have come out on the other side after crying out for help. I am able to step over these troubles and relax with a feeling of true contentment and happiness in the place of fear and anger.

These Bible verses are not just words full of false hope or fancy language to me. They are the Truth and they offer what nothing else in this world can… peace in suffering.

So much of the time, we create hope out of a false sense of changing something. For years, I put my hope in having another daughter one day. I actually drew happiness from this human, earthly desire. I did this against impossible odds. Against the fact that we can’t afford another child. Against the fact that we have literally NO room in our home for a new baby. Against the fact that my husband wants no more children. Against the fact that I have kidney disease and another pregnancy would be seriously detrimental to my health. Despite these overbearing reasons, I still filled myself with this false hope of another girl, like trying desperately to fill a glass with no bottom. After much prayer, I realized that all this was simply a case of false hope, never to be obtained. Even if I had another daughter who was healthy, there would be something else to take the place of what I saw as a void in my life. I decided to hand that false hope right on over to God. I traded Him. I traded up for a true hope found only in Him. No matter what the circumstance, this divine expectation brings true joy and peace.

Until you stand on this mountain that God directly provides us all, so much can seem only painful, confusing, and downright dismal. When I was a young girl, my grandfather gave me an intriguing picture that I found fascinating! I framed it and put it on my dresser to see each day…

At first glance the picture seems to be of a scary skull, but when you take a moment, refocus your eyes, and truly study the entire picture, it turns out to be a beautiful drawing of a woman sitting at a vanity looking in the mirror. Finding beauty in this picture only took a simple change in point of view. Beauty appears from the grace that God gives us in any problem or situation we are facing.

Heartache and hope share the same path, one pushing the

other ahead. This was designed for us on purpose, never

to leave us crushed under the weight of life’s trials.

How else can you explain how I felt just this morning? Threading Elise’s tight little arms through her sweater as I got her dressed for the day, I looked down at her eyes, staring out into the morning, unable to see me. All I saw was pure beauty. What a wonderful design for me as her mother to see perfection in my child who is in noworldlywayperfect. Not even close.

Nearly every day for the past 5 or so years, I have been in the habit of telling Elise she is “my beauty”. She can’t hear my words, and doesn’t see the affection in my eyes, so I guess I tell her this more for my own benefit. It helps to continuously remind myself day in and day out that Elise’s brain injury and all that come with it do not define my relationship with her. That’s entirely up to me.

Anyone who has known me for more than 2 seconds is well aware of the fact that I love to put the best picture forward when it comes to Elise. I find great joy in dressing her in pretty dresses and glittery shoes. She is rarely seen in public without earrings and a bow to match. This is how I am creating a beautiful picture of my daughter in an earthly, outward fashion. This type of beauty doesn't even begin to compare to the genuine beauty that I see in her life on a daily basis. At home, she is not primped and dolled up. As she lays helpless in bed, is fed through a tube, is medicated throughout the day, receives therapy, and is consoled when crying, she is stripped to her authentic self. These are the times that I look at her through Christ's eyes and experience the true beauty that her life has to offer.

I found a picture that I made back when we were fundraising for our wheelchair accessible van. A friend of mine that was heavily involved in the effort to raise funds for this vehicle asked me to create the word “HOPE” in whatever way I could think up. For their picture, she used herself, her children and her husband to form the letters with their bodies bending into positions on the floor.

When I thought of what the word meant to me, and ultimately to Elise, I came up with this...

Creating a word such as this out of objects that would usually represent the exact opposite merely came down to viewpoint. When put together in this way, items that are typically reminders of what is faulty with Elise’s body and brain became a beautiful word overshadowing any imperfection that these individual objects usually hold. It’s an awesome thing when you can step back, take a moment, and refocus on finding the beauty in this world amid the beasts that exist all around us.

“Therefore, with minds that are alert and fully sober, set your hope on the grace to be brought to you when Jesus Christ is revealed at his coming.”

I don’t put my hope in having another girl...

I don’t put my hope in Elise’s progress or cure….

I don’t put my hope in an easy, comfortable life here

on earth…

For as long as Elise blesses me with her presence as my daughter here on earth, there will be more 911 calls, more hospital stays and lengthy illnesses. She will keep me up at night like a 10-year-old newborn and we will leave stores, restaurants, movies, and church because of her screams. I am sure that I will cry a million more tears over her as I watch her contend each day with a brain and body that do not agree. These are all guarantees. The ultimate assurancegiven to us, though, is one that will always trump whatever life has to dish out.

Isaiah 40:31:

But those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

My goal as Elise’s mom for the past 10 years has been to find the beauty, joy, deep love, fulfillment, purpose, and value in Elise's life. No matter what is to come for the next 10 years, I will continue to pray for the ability to find God's Glory in the messiest of situations.

I refuse to believe that our God, who gives us genuine hope, created ALL of this beauty within our pain merely to be tolerated.

___________________________________________

OK, so these aren't examples of the heavenly hope that I wrote about in this post, but here are a few examples of my everyday "earthly" hopes that make me smile...

I “hope” I learn to decipher Elise’s cries better in the future. Hope to never again rush the entire family away from a restaurant to an after-hours clinic because of Elise’s cries of pain unless 1st doing a thorough body check! My “not-so-amused" family, (mainly daddy), waiting to find out if Elise is sick.

Only AFTER the nurse took all vitals and swabbed her for strep and flu, I discovered that her pain and discomfort was coming from a belt on her wheelchair pinching the CRAP out of her back! Major mom/daughter communication fail…

I “hope” Ty will FINALLY learn to ride his bicycle without training wheels before he goes to college...

I “hope” I can find a better set up at my brother’s house next Easter for Elise. I’m not sure this is the best positioning system for a child with cerebral palsy to keep them on a couch!

I “hope” my boys learn to play well together one day without the aid of a technological device… (they play a lot together without technology... just not as well as I had hoped!)

I “hope” this person who parked next to our van and took up all of the handicapped ramp area ran out of gas on their way home! (I mean, come on people!)

I “hope” my 12-year-old son, Lane, doesn’t BLOW UP MY HOUSE with his homemade bunsen burner!

I “hope” that Ty always remembers our picnics in his treehouse...

(and not my ridiculously huge sunglasses!)

I "hope" Elise never outgrows her Daddy's lap...

(she's working on it!)

I “hope” this was just an oversight by Ty in his kindergarten class this year!

(Orange, Orange, Orange, Green?)

I hope Lane continues to grow in empathy and compassion toward others as a result of being Elise's big brother...

I hope Ty outgrows his "toilet paper hanging out of a shower cap" routine...

(It's time, son)

I “hope” my boys never forget how much fun it was to take a bubble bath in GiGi’s tub together!

I “hope” Elise and I can always find a reason to laugh together! (Although unaware of the funny wig and glasses, she was enjoying the attention…)

A picture I took at the old railroad tracks in Allen this summer. How true this is!

This song has been played in my house hundreds of times by now. It is called "Hope in Front of Me" by Danny Gokey (For those who watch, think: guy from American Idol Season 8). Please take a moment to listen and read his lyrics... they are very beautiful!

Ashley, I don't think you'll ever realize the profound impact you and Elise have had on my life. Seriously. I have recently been accepted into Master of Special Education and I have now been working in Disability Services/Special Education for two years and, honestly, have found myself in the right industry. I am trying to save money to travel to the States and I would love to meet you and Elise and the rest of your family one day. She's the young girl who changed my world.

Bella, I just love knowing that Elise's life has had an impact of someone else's life! Finding the value in her life is the most important thing I can do as her mom. I know if she could understand it all, she would be so happy! People like you are so needed and necessary for kiddos with special needs. The kids you work with, no matter what their personal needs, WILL know the heart that you have for them. Please, please, please let me know if you ever travel to the US... I would love to meet you and give you a big Texas hug, and would ask you to give a big Australian hug to Miss Elise!

Thank you Ashley!! I love the light up shoes! Aren't they just fabulous?! I am working really hard right now to save up money so coming to the states is honestly a real possibility. Number of kids I need to meet and thank, but Elise and of course you are number 1! Texas is definitely on my list!!

Hi Ashley. I stumbled across your blog last year, while googling vague thoughts regarding my own brain injured daughter. I have returned often, to check on your beautiful family. You are wonderful and I just wanted to tell you that somewhere up in Washington, a family cares and is wishing you peace and happiness.

Thank you for your wonderful comment! It means so much to me to know that there are others reading my blog that may be going through some of the same things and emotions are we are while on our journey with Elise. Your comment gave me a smile this morning!

Hi Ashley!How are y'all doing? You are in my prayers, sweet sister. My older sister had a similar condition to Elise, and so I grew up understanding the challenges and joys and breakthroughs that you face full well. Elise is beautiful and her photos bring tears to my eyes!

Lisa, thank you for the message! I love knowing that someone out there shares in what we are living with Elise. It's never the same from family to family, but we share enough of the experience to have a connection. It sounds like your sister isn't with you anymore. I am sorry. I, too, will experience that loss one day with Elise. But, we will squeeze as much JOY out of every day that she is here!

Hi Ashley. You have a beautiful family! I read your blog last year and recently I had a patient who reminded me a lot of Elise. I came back to your blog to see how Elise was doing but there was no updates. I hope all is well! Wishing you and your family have a great year.

Mabel, thank you for reading my posts and for checking in on us! We are doing well... Elise has faced some new challenges in this last year, so I took some time off of writing. I am wanting to pick it back up, though, and I have plenty to write about :) I always love to hear from people who work with kiddos like Elise. I adore every last person that plays a part in her life through school, therapy, and her medical care. Please check back in the next month or so... I'm hoping to start writing again! Thanks again for your post...

Annie, we are good! Thank you for asking... This past year has brought many new challenges to Elise's life, and I took a break from writing amid all of the craziness. I am thinking about posting again, as I have missed writing about her and sharing our experiences with y'all! Please check back in the next month or so. I hope to have something new up! There's never a dull moment around here, so I have plenty to write about :)

Hi! Well, over the past year and a half, Elise has faced a more challenging time in her life. We are focusing all of our efforts on her comfort and quality of life. Her seizures have increased and wreak havoc on her little brain. She is still spoiled rotten and covered with love and attention, though! Our boys are growing fast and our family still tries to include Elise in most of what we do. I stopped writing on the blog because her needs increased to a point that I just have to focus on her and the rest of the family with little time left over for writing. I miss it terribly, though :) Thank you so much for checking up on us. I truly appreciate it, and who knows? Maybe I will start writing again if life slows down in the future!